URGENT: Email the FDA about Ampligen now and daily – final decision is imminent

I wrote a great letter to the FDA, I've been writing for all the campaigns that seam good to me. But, I have to say, I was completely deflated to see that only 750 people total wrote in. No wonder there is not much interest in this disease. Oh my, so sad.

I wrote a great letter to the FDA, I've been writing for all the campaigns that seam good to me. But, I have to say, I was completely deflated to see that only 750 people total wrote in. No wonder there is not much interest in this disease. Oh my, so sad.

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Hi Mouse girl - great that you've written and that you write in all these good campaigns.

The FDA saw the 750 people who wrote in as impressive, though. Relative to the response they normally get, it must have been big.

On research1st's account of the FDA meeting, it says, '[The FDA rep] emphasized FDA’s recognition of CFS as a serious disease with no approved therapies and acknowledged the strong public interest in the day’s topic as evidenced by written testimony submitted to the record by more than 700 people.'

That was certainly my impression - it wasn't just what that FDA rep said but how she said it - she seemed amazed (before my connection dropped out because we were present in such numbers that we stuffed up their servers).

Bob Miller has asked me to remove Sara_Mabry@casey.senate.gov from the list following guidance from Senator Casey's office and there may be other additions or removals according to response so please keep an eye on this thread. I don't have edit access to the article so changes might be slow to appear there.

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That's now updated in the text of the article so we can copy and paste or click or whatever!

I wrote a great letter to the FDA, I've been writing for all the campaigns that seam good to me. But, I have to say, I was completely deflated to see that only 750 people total wrote in. No wonder there is not much interest in this disease. Oh my, so sad.

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Interesting. To me, it seemed like a powerful response from a group of very ill patients.

Everyone, The 750 emails that gave your personal testimonies were amazing. The FDA was not prepared to get such a response. The numbers overwhelmed them to the point that they made specific comments several times, almost as a plea to say, We hope you're not angry with us. Patients did a great job by emailing and telling FDA what it's like to live with this illness every day and that we deserve a treatment. Anyone who was able to send an email should feel proud. And those who could not send an email need to know that those 750 emails helped to represent you and we as patients understand why you could not. We are currently sending in about 350 emails daily for the current "Approve Ampligen Now" action, if we could get that up to 500 emails daily that would be great. So again as a seperate action from the petition, ask friends and family to help any way they can and keep the emails flowing daily.

I am humbled by your support and your actions to help change our lack of treatments,
Thank you,

If you have an account on other boards or communities, it would be greatly appreciated if you could post about the petition there. If you're on Twitter or know someone with a large following, that kind of exposure is invaluable. The same goes, of course, for other Facebooks, printed press, etc. This includes audiences unrelated to ME/CFS.

An FDA "no" to Ampligen would significantly slow down investment in chronic diseases in general. They voted it safe. They're not contesting its effectiveness per se, they mainly insist on knowing which subset is affected more than others. We're not saying this doesn't belong in an efficacy profile, we're saying its added benefit doesn't outweigh the tremendous human and financial cost. It's an insufficient justification for keeping a potentially life-saving drug from bed-ridden patients with no alternative. Authorities in Canada and Brussels approved it 2 decades ago. Do you really think they're less diligent? Respect our right to decide with our doctors and provide incentive for sponsors to give drug companies the means to get those subsets refined.

We already know the subset that matters most. They're called ME/CFS patients.

I don't get it. Why are people sending it duplicate (or daily?) emails? Surely each name will only be counted once. And what about those marked 'anonymous', with no message? Do you think they'll be taken seriously?